Dealing with your parent's cancer by Canteen Australia

Take a breath (things to focus on).................................3 Cancer facts straight up ................................................4 Getting the right information ........................................7 What are they doing to my parent? ..............................9 When to worry and what to do ...................................11 Good Googling.............................................................12 Changing roles ............................................................15 Relationships; family and friends ...............................16 Let’s talk about feelings (or not!) ................................20 Talking is tough!..........................................................23 Supporting your parent ...............................................25 All about you (staying healthy) ...................................29 When it all seems too much .......................................31 Getting support ...........................................................34 What’s a coping strategy? ..........................................36 Not a saint...................................................................37 Grief and loss ..............................................................38 Beyond cancer .............................................................40 If cancer returns ..........................................................42 If treatment doesn’t work ...........................................44 School, study and work ...............................................47 Finances and other grown up stuff .............................49 Feed yourself (and everyone else) ..............................51 What cancer is that? ...................................................55 Test and more tests.....................................................59 Treatment de-coded ....................................................61 Who is that person? ....................................................63 Glossary (or what the….does that mean?) ................65 Tear off tips for friends ..............................................69 Talking cards ...............................................................73 Don’t freak checklist ...................................................77 Where to get help .......................................................78 Bibliography ................................................................80 Acknowledgements.....................................................81 Help! Who do I call? ...................................................83 First Published January 2008 Updated Re-Print March 2010 ISBN 978-0-9804637-1-2 © CanTeen – The Australian Organisation for Young People Living with Cancer 2010

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Introduction

You’ve just been told that one of the most important people in your life has cancer.

Now What…? There are probably so many things running through your head – questions, feelings, new thoughts – that it’s hard to know where you are, let alone where you might be going or what you might do. You are probably asking now what? Well, this book is designed to help you understand some of what is going to happen, make sense of it and give you some directions for the challenge that your parent’s cancer diagnosis has thrown at you. Cancer is the last thing that anyone would invite into their lives but like lots of other things, you don’t have much control over it. Having the right kind of help and information can make a big difference.

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Introduction

This is not a “book” to be read from beginning to end but rather something for you to dip into when you need it. It contains information, practical tips plus some support and encouragement to assist you. You can also log onto the website www.nowwhat.org.au to access the information as well as read some more detailed information about some topics.The website also has other useful resources, stories, blogs and forums to support you through this tough time. We have used the words parent, mum or dad when referring to the person who has cancer in your family. This is for simplicity even though we know that for some of you reading this, the person who looks after you could be a grandparent or another adult. It doesn’t matter who that person is, the journey is still the same.

You may use all of what’s inside this book or you may only choose to use a bit. That’s OK.

Top Tips Don’t let others keep on giving you bad advice

We’ve had a lot of input from other young people who have shared the same stuff, so we hope that you find something in here that helps to unscramble the world you have suddenly landed in.

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Head Stuff/Take a breath

It is not your fault

OK, you now know that your parent has cancer and the path of your life has taken a great big turn. As hard as it may be at this point to focus on anything, there are a few things that can help you to get a better handle on the situation. (And while you are reading these you can stop holding your breath!)

Many people survive cancer There are over 250,000 people living with cancer in Australia today. Discoveries of new and more effective ways of diagnosing and treating cancer are being made all the time, leading to improved survival rates. Even though you may

be completely freaked and your parent may be quite sick, remembering this may give you some hope during tough times.

There are others out there (no, not just aliens!) While no-one will feel exactly the same way as you, there are lots of other young people out there who are living with a parent who has cancer. It can help to know that others are experiencing similar things. See “Where to get help” for websites to connect with other young people.

Cancer is caused by lots of things, many of which doctors don’t even understand. But none of these have anything to do with anything you said, did or thought.

Knowledge is power Having the right information can be a big help in dealing with your parent’s cancer. Learning about the particular cancer and its treatments can take some of the fear out of it. Things imagined can often be worse than the reality.

Hope Hang on to hope. It doesn’t matter how dark things may get, try and find something to be hopeful for. No-one can take that from you; never give it up.

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Head Stuff/Cancer facts

You would have been familiar with the word cancer even before your parent was diagnosed. But knowing what it actually is, is a different thing. There are so many stories about it and so much written about it, but not all of what you read in the mags, newspapers and the net or see on TV is correct. (What a surprise that must be.) Part of the difficulty of understanding what cancer is comes from the fact that cancer refers to more than a hundred different diseases. All of these diseases have one thing in common: cells that divide and grow abnormally. Our bodies are made up of billions of cells â&#x20AC;&#x201C; they are basically like building blocks. Normally, cells grow and divide to make more cells only when the body needs them. This orderly process helps to keep the body healthy, replace worn out cells and to heal after an injury. 4

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Head Stuff/Cancer facts

At the start I really wish I knew... how I would miss all the things that mum used to be able to do.

However, sometimes this process doesn’t go according to plan and the cells can get out of control, producing new ones even when they aren’t needed. This behaviour by the cells can form a mass of tissue called a growth or a tumour. Tumours can be benign (not cancerous) or malignant (cancerous). Benign tumours can often be removed and don’t spread to other parts of the body. Malignant tumours can invade and damage nearby tissues and spread to other organs in the body. The spread of cancer from one part of the body to another is called metastasis. Cancers are usually named for the organ or type of cell in which they begin. So lung cancer would have started in the lungs. Some, like leukaemia, do not form tumours but are diseases of the bone marrow and blood. The most common adult cancers are explained in the “What cancer is that” chart on page 55.

Why do people get cancer? The causes of most cancers are unknown. However some things like smoking, spending too much time in the sun, not getting enough exercise and not having a healthy diet, may put people at a higher risk of getting certain types of cancer. Coming in contact with certain chemicals and toxins can also increase the risk. If you have a particular risk factor for cancer, this does not mean that you will definitely get cancer, just as not having it does not mean that you won’t get it. It is all about probability. Smoking is a good example of this: if you smoke, it is not certain that you will get cancer. 5

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Head Stuff/Cancer facts

If you don’t smoke, it is not certain that you won’t. But if you smoke, your risk of getting lung cancer is far higher than if you don’t. Nine out of ten people who develop lung cancer are smokers. However sometimes your parent may not have had any of these risk factors, yet they still got cancer. Often there is no apparent reason for the cancer.

Will my parent die?

Can mum or dad pass it on to me (like my eye colour)?

This is discussed in more detail in the chapter “If treatment no longer works”.

Only a small number of cancers (between 5-10% or less than 1 in 10) seem to be the result of having a faulty gene and these tend to be the cancers that affect older people. So, say your dad has bowel cancer and maybe your grandfather had it, there is a chance that it could be caused by a faulty gene. But it doesn’t mean that you will get it as a young person. If you are concerned about this you can talk to your parents, ask their doctor or check out one of the websites in the “Where to get help” section on page 78.

Remember:

Most cancers are not passed down from parent to child. However there are some cancers that do have a genetic component. That is they are caused by a faulty gene that may have been inherited from your parents.

Seventy percent of people who get cancer are over 60.

You may worry that you will catch cancer (no, it’s not a silly thought). You can’t. It is not a contagious disease. So there are definitely no problems with hugs and kisses.

While many people survive cancer, the reality is that people do die from it. There are many factors that affect what the outcome will be for your mum or dad including what type of cancer they have, where it is and how advanced the cancer is.

It’s not like catching a cold

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Head Stuff/Getting the right info

Having the right information is an important way to help you cope with what’s going on.

Not knowing what’s happening may be more stressful. Everyone in your family will deal with things in their own way. For some people having all the information is important but for others just the key bits are enough. You may not want all the information at the very beginning or you may not want it all at once. But as time goes on you may be ready to ask more questions.

Whatever you choose is OK but here are some questions that you may want to ask your parent, their doctor, the nurses or the social worker at some stage.

t 8JMM NZ QBSFOU HFU CFUUFS

Remember: You may need to remind them to speak in plain English, not doctor language.

t 8JMM UIFSF CF NPSF UIBO POF type of treatment?

t *T UIFSF B DIBODF UIBU * NBZ get this cancer too? t 8IBU USFBUNFOU XJMM NZ parent get?

t )PX XJMM NZ NVN PS EBE feel while they are having this treatment? t 8IBU LJOE PG DBODFS EPFT NZ parent have? t *T UIF DBODFS QBJOGVM t 8IBU QBSU PG UIF CPEZ EPFT it affect?

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Head Stuff/Getting the right info

t 8JMM UIF USFBUNFOU CF QBJOGVM t )PX PGUFO EP UIFZ HFU UIJT USFBUNFOU BOE IPX long will it last? t 8JMM JU DIBOHF UIF XBZ NZ QBSFOU MPPLT GFFMT or acts?

Remember:

t )PX XJMM XF LOPX JG UIF USFBUNFOU JT working?

You may need to remind them to speak in

t 8IBU XJMM IBQQFO JG UIF USFBUNFOU EPFTO U work?

plain English, not doctor language.

t 8IFSF XJMM UIFZ HFU UIJT USFBUNFOU BOE DBO * go with them? There may be other questions that you have. Use the space below to write them down

Information Overload When you are stressed, upset or scared, itâ&#x20AC;&#x2122;s often hard to take in everything that is said. More than likely you will only remember a small amount of stuff that you are told, especially in the beginning. So here are a few tips on how to get the right information and ways to remember it: t 8SJUF ZPVS RVFTUJPOT EPXO CFGPSFIBOE (or use the list above). t 8SJUF UIF BOTXFST EPXO t "TL QFPQMF UP SFQFBU UIJOHT JG ZPV EPO U HFU JU t "TL UIF EPDUPS PS UIF OVSTF UP VTF B NPEFM (not a magazine one, but a plastic one) or draw a picture.

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Head Stuff/What are they doing…?

There are over 100 different types of cancer and each type is treated differently. The aim of the cancer treatment is to get rid of the cancer cells. What sort of treatment your parent receives will depend on a number of factors: t UIF UZQF PG DBODFS

Knowing what is being done to your mum or dad and why, may help to take some of the fear out of this whole experience.

t XIFUIFS UIF DBODFS IBT spread t ZPVS QBSFOU T BHF BOE UIFJS general health t UIFJS NFEJDBM IJTUPSZ t XIFUIFS UIF DBODFS JT newly diagnosed or if it is a recurrence (the cancer came back).

The plan that the treatment follows is called a protocol. However, people’s bodies react differently to treatments so even if two people have the same cancer and the same treatment, how they cope with it may be different. It’s important not to compare your parent’s experience with another patient – we are all individuals. One of the hardest parts of this journey is waiting to see if the cancer treatment is working. The situation can be changing all the time. One day your parent may be feeling really well and then the following week they can be feeling sick again. Unfortunately, what side effects your parent gets or how severe they are has nothing to do with whether the treatment is working. 9

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Section Header

T in he m fo o rm st ati us on efu th that l pie pa e pi I go ce o th per eces t wa f m e p ab of s...

th um roce out ro ha ss ug d th h. to at go

The doctors may try one treatment and then try something new and the treatment can last for several months or even years. This uncertainty can make things really hard for everyone. When things seem really bad, try to focus on the fact that the treatment your parent is undergoing is working to stop the cancer and eventually make them better. The charts on page 61 give brief overviews of the main types of treatments: their medical names, what they actually are, how they are given and what their side effects may be. You may have a lot more questions to ask after reading this. Check out the recommended websites for more information or ask your parents or the medical staff treating your parent. (See tips for talking to your parents and the medical team on pages 7 & 8.)

Things to look for When your parent is being treated for their cancer they can get infections more easily. Thatâ&#x20AC;&#x2122;s because the white blood cells that fight infections in our bodies are often affected by the treatment, making it harder to fight things like colds, the flu or chicken pox. An infection could make your mum or dad sicker, so they may need to stay away from crowded places or people who have an illness they could catch. You can help by: t washing your hands regularly to avoid spreading germs t MFUUJOH ZPVS QBSFOU LOPX JG youâ&#x20AC;&#x2122;ve been in contact with someone who is sick or has a cold t not coming in close contact with your parent if you get sick (this is another good reason for taking care of yourself) t checking with the doctors or nurses if you are worried about infections or other stuff that may harm your parent.

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Head Stuff/When to worry

Your parent may be really sick while they are being treated and sometimes it is hard to know what is a normal reaction to the treatment and what is something that you need to worry about.

t 8IFO EP * XPSSZ BCPVU B UFNQFSBUVSF

Your mum or dad may also get sick after treatment is finished and you might be worried about that as well.

t 8IBU JG * OPUJDF CMPPE PO B UPXFM JO UIF UPJMFU or in their bed?

To help you work out when to worry and when not to, here is a list of questions to ask that can help to sort this out. You may want to ask another adult or the nurse who is looking after mum or dad to get these answers for you. You could even just give them the list and they can put in the answers for you.

t )PX NVDI WPNJUJOH JT UPP NVDI t 4IPVME * XPSSZ JG UIFZ BSF B CJU TMFFQZ or vague – more than normal? t 8IBU BCPVU HPJOH UP UIF CBUISPPN B MPU

t *T JU B QSPCMFN JG UIFZ DVU UIFNTFMWFT anywhere? t 8IBU JG * OPUJDF CSVJTFT There may be other questions that you have or that relate directly to your parent’s situation. Use the space below to write others down.

There is also a Don’t Freak Checklist at the back of the booklet (page 77) so that you can write down the answers to these questions. 11

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Head Stuff/Good googling

Without stating the obvious, the net is a great source of information but as we all know it is also full of some weird stuff. That’s not always helpful when you are trying to get accurate and useful information.

Here are a few tips to make your Googling a bit more successful.

Always check the source of the information Much of the information on the net, while well meaning, can be misleading or out of date. Look at where the information is coming from. There are many reliable cancer organisations that have great information that is accurate and up to date. (See the list of some of these in the “Where to get help” section on page 78.)

Don’t believe it all If the claims in an article seem too good to be true, then they probably are. Living with cancer can make us all very open to promises of cures and miracle treatments. It’s a good idea to check out the claims made with your parents, their treating doctor or a reliable web source.

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At the sta I really w rt I knew... ish

h an ow ca ac ha nc cu rd er ra it pa te is tie pr to nt og ma s. no k sis e fo r

Look who is behind the website you are on If it starts with something like “I cured my own cancer in three weeks” or “The facts the medical profession won’t tell you”, it is a good guess that it is not a reliable site. People have all sorts of reasons for putting stuff up on the web.

What they don’t tell you Every treatment has risks and benefits. If the site doesn’t mention both the good and bad bits it may not be telling the whole story. If you hear about a treatment from one website look for other evidence that backs it up on another website.

Make sure you are searching the right stuff Each cancer is different but the treatments and outcomes for the same cancer can also be different depending on things like the stage and where it is in the body. Before you head off into cyberspace, see if you can find out these things about your parent’s cancer. (Could save you from freaking over something that you don’t have to!)

Use the web information as a starting point Information found on the web can be a good way to start a conversation with your mum or dad. Having information can help you to feel a little bit more in control. It is possible that you are better at searching the net than your parents. This may be one way that you can provide some practical support. 13

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Heart Stuff/Changing roles

t :PV SF IPNF BMPOF NPSF BOE you thought that might be fun?!). t :PV SF MPPLJOH BGUFS ZPVOHFS brothers and sisters. t :PV HFU GBSNFE PVU UP relatives and friends. t :PV EPO U HFU UP TQFOE BT much time with your friends. This can all seem very scary, challenging and at times even very unfair.

No matter how much you hoped it wouldn’t, life changed once your parent was diagnosed with cancer. Living with a parent who has cancer can affect your life in almost every way. Some changes are really big while some are not as noticeable. Often the focus is on how cancer affects your feelings but it can also mess with everyday life: routines change, it’s not always easy to plan for things, people act weird and nothing seems certain anymore.

You may have to dig deep and find a strength that you didn’t know you had. You may also have to put up with well meaning people telling you how brave you are (when really all you want is for it all to go away). People will deal with things in different ways as they try to make sense of this new situation. You may be unsure about the future, what is happening at home or even what’s going on in the family now. Do these things sound familiar? t :PV SF EPJOH NPSF BSPVOE the house – have you had to find the washing machine?

t NJOVUF OPPEMFT HFU SFBMMZ boring after a week. t :PV WF IBE UP NPWF CBDL home. You may feel like your normal life has been stolen from you. This isn’t fair and definitely not what you asked for. This reaction is perfectly OK. Most of us are happy with routines in our lives and don’t like too many changes, especially when those changes feel out of control and life is not how you want it to be. Although it is much easier said than done (aren’t most things!?), try to be flexible and take each day as it comes. Getting used to what this now means for you, your parents and the rest of the family may take a while. 15

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Heart Stuff/Relationships

A cancer diagnosis can put a strain on all of your relationships: parents, brothers, sisters and friends. Dealing with these changes can be really hard.

Parents Whether your parents live together, are separated or you only have one parent, your relationship with them will more than likely go through some changes. Lots will depend on your age, whether you are still at school or working and whether you have moved out of home. All of us have the ‘normal’ parent/child hassles and conflicts, and the bad news is that cancer can make these even tougher to deal with.

That’s not to say that there isn’t also a really big chance you will develop a better relationship with your mum or dad and come to appreciate things that you may not have been aware of before. Little disagreements may no longer seem so important. Don’t expect things to change overnight – if there were things you didn’t agree on before it doesn’t mean you will miraculously see eye to eye now that they have cancer. You still want to be you but now circumstances mean that some things have to change. Seeing your parent sick, in pain and maybe not even looking like they used to is really hard. It can make you feel guilty if you get angry with them or want to do things that they don’t agree with.

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Heart Stuff/Relationships

There may also be a lot of focus on your parent who is unwell and you may feel a little left out of their lives. Things like birthdays, special events or school meetings may get forgotten. This can be hard to handle but it doesn’t mean they don’t love you, just that they are dealing with a heap of stuff as well.

We are all individuals and will deal with things differently. You probably have set roles in your family: you know, the responsible one, the rebel, the quiet one, the one everyone blames.

You will probably read a lot about the importance Just like your relationship with your of talking about things and not bottling things parents there may need to be some up. That can be easier said than done. It is negotiations and lots of talking about the really important to learn how to do this. changes that are going on in the family. 4FF i5BMLJOH JT UPVHIw PO QBHF GPS UJQT PO If you are the oldest in the family you may take how to communicate with your parents. on some extra responsibilities – for some of Your parents may also worry that you have you this may be fine but others may find it a no-one to talk to and may want to organise for big hassle. Younger brothers and sisters may you to meet with a social worker, psychologist also not like the fact that they think you are or counsellor. being the parent. You know the cry: “You’re Whilst you may not want to admit it, they are not mum/dad! Stop bossing me around!” probably right and are only doing it because But the other side to this is that sometimes it they are concerned about how you are doing. really does bring you closer together. It puts Let them know if you are talking to people and you on the same team and you’ll learn stuff if you do feel like you have some support. about each other that you didn’t know.

Brothers and sisters Best friends or biggest pains? Brothers and sisters often have a love/ hate relationship and when you throw a really sick parent into the mix things can get a bit tricky.

However just like the relationships with your parents, don’t expect miracles. Remember: We all react to difficult situations and change differently. We all express our fears and pain in different ways. Go easy on each other – believe it or not your brothers and sisters do understand what you are going through – they’re going through it as well.

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Heart Stuff/Relationships

Friends Friends are always important – you probably spend as much time with them (or more) as you do with your family. You may act differently because of your parent’s cancer, and your friends might find this difficult to deal with sometimes. We know that for many of you this one is a biggie. You might wish your friends were better at being there for you. Remember: You may have acted the same way as your friends are acting before you had this experience.

As unfair as it may seem, you may have to help your friends to deal with what is happening for you. They might need help in getting over their fears. Often you will have to make the first move and to let your friends know that you are able to talk about your situation.

It’s not because they don’t care, but more that they just don’t know what to say.

Below are a few things that you might want to think about concerning your friends.

Sometimes your friends will say stuff that really annoys you and makes you angry. This can be really hard. But try to keep in mind they didn’t try to tick you off on purpose, it’s just that they don’t understand. It’s OK to let them know. You can start with “You know, that annoys me when….”.

Friends don’t know what to say Your friends may be scared to say the wrong thing or to ask you a question. Often they will just say nothing.

If you want to talk you may have to start the ball rolling.

Friends won’t say things to deliberately tick you off

Some of the things your friends may be thinking include: t 8IBU BN * TVQQPTFE TBZ or do? t )PX DBO * CF B GSJFOE UP someone whose parent has cancer? t 4IPVME * TUJMM TIBSF things that are bothering me? They seem trivial compared to what my friend is going through.

The most useful piece of information that I got was...

to talk to other people and relax.

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Heart Stuff/Relationships

Friends may ask tough questions (or even questions that seem a bit silly) Be prepared for questions that may seem strange – remember all the things that you didn’t know before all this started. Sometimes you may not want to answer questions about your parent’s cancer. It is OK to let your friends know that you don’t feel like talking right now.

Top Tips Don’t push yourself beyond what u feel

comfortable with, don’t try and be what someone else expects you to be.

Your friends have their own lives It may seem that your friends are just getting on with their lives without you and you feel a little left out. Try to remember that they have their own lives too and they aren’t facing the same situation as you are. Unfortunately, the world doesn’t stop just because your parent has cancer (although for you it may seem like you have entered a whole different world). Try to stay in touch and let your friends know that you still want to be part of what’s going on even if you can’t always go out and do things. SMS, msn, on-line social networking sites (like FaceBook and My Space) are all great ways to stay in touch (if you have access to these). You could even use the old fashioned home phone.

Friends may change It’s amazing how common experiences can lead to friendships. You may connect with other young people who are going through the same thing. It may be easier to talk to them about what is happening for you because they understand.

Lots of young people say that this is often the best support. You may also lose some friends along the way. Some people find it too hard and you may also decide that they are just not worth the hassle. Having positive people in your life is important at this time. Go to www.nowwhat.org.au and www.canteen.org.au to find ways to connect with other young people in the same boat. Also check out the “Tear off tips for friends” and the “Talking cards” at the back of the book.

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Heart Stuff/Let’s talk about feelings

Dealing with your parent’s cancer can throw up all sorts of different feelings. Some you may have expected and others may come as a complete surprise. It may not always be so easy to pinpoint your actual feelings and they can also be hard to understand. Remember: There is no right or wrong way to feel. It may feel a bit like being thrown around in a washing machine (not that many of us have ever experienced

that, but just pretend) or the experience has been described as like being on an “emotional rollercoaster”. Maybe this refers to the feeling of racing along feeling like you have no control or maybe it is the big ups and downs that you feel. Many of you may not be comfortable sharing your feelings and sometimes you hope that if you just ignore them they will go away. (Guess what? They don’t.)

Feelings are not good or bad, they are just feelings. Even if you hope that they will go away, try to ignore them, or even feel guilty about them, they will still just be there. The problem is that when things get bottled up they need to get out somehow and this can lead to behaviour that is not safe, angry outbursts or a bit of a meltdown. As hard as it may be, finding some way to express what you are feeling is really important in helping you to deal with the stress of living with a parent who has cancer.

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Heart Stuff/Let’s talk about feelings

The list of emotions below may help you put a name to what you are feeling. (These are what other young people have described.) You may experience all of these at some stage, or maybe only one or two. You may switch from one to the other depending on what is happening in your family and with your parent’s treatment.

Shock/Disbelief More than likely you will feel shocked when you hear that your parent has cancer. You may also go through a stage of disbelief. This can happen even if you thought that something was up. Cancer was probably not what you were expecting.

Scared Doesn’t matter how tough, grown up or brave you are – finding out your parent has cancer can scare the crap out of you. There is a lot of fear around a cancer diagnosis. Some of it may be based on facts but others may be about things that won’t or can’t happen. Some of the fear may go away as time goes on. Admitting that you are afraid can sometimes be a big relief.

Angry Feeling angry when you first find out that your parent has cancer is pretty normal. You may think that it’s not fair, want to know why it has happened to you (and your mum or dad). And then you may get angry at yourself for feeling that way.

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Heart Stuff/Letâ&#x20AC;&#x2122;s talk about feelings

It is OK to feel angry but learning some positive ways to express it is important. See â&#x20AC;&#x153;Safe ways UP BDU PVU ZPVS GFFMJOHTw PO QBHF Anger can hide other feelings like fear or sadness.

Sad There are lots of reasons to feel sad about your parentâ&#x20AC;&#x2122;s cancer and itâ&#x20AC;&#x2122;s all part of the reaction to it. However, if these feelings get really bad, donâ&#x20AC;&#x2122;t seem to go away after a few weeks and start to get in the way of other things then you may be Neglected feeling depressed. (See â&#x20AC;&#x153;When it all seems too With so much of everyoneâ&#x20AC;&#x2122;s NVDIw PO QBHF GPS NPSF PO EFQSFTTJPO

energy and focus going into Guilty your sick parent it may feel Some of you may get â&#x20AC;&#x153;the guiltsâ&#x20AC;? big time about like you are being left out or your parentâ&#x20AC;&#x2122;s cancer. This can be about a number forgotten. Itâ&#x20AC;&#x2122;s not uncommon of things; youâ&#x20AC;&#x2122;re healthy and theyâ&#x20AC;&#x2122;re not, youâ&#x20AC;&#x2122;ve for the familyâ&#x20AC;&#x2122;s focus to change. wished bad things would happen to them or It can be hard to accept that argued with them, you laugh and still have fun you donâ&#x20AC;&#x2122;t get as much attention or you wish you didnâ&#x20AC;&#x2122;t have to do the extra things at this time. that you may have to do.

Nothing Sometimes you may feel nothing. This can be connected to shock or disbelief. It can also be about being too busy in your own life â&#x20AC;&#x201C; new boy/girlfriend, school etc. It may take a while to feel something. Again, donâ&#x20AC;&#x2122;t be hard on yourself, this doesnâ&#x20AC;&#x2122;t mean you donâ&#x20AC;&#x2122;t care â&#x20AC;&#x201C; itâ&#x20AC;&#x2122;s just that you may take time to deal with it.

Embarrassed

Your parent may look different and perhaps act a bit differently because of the cancer. People may also ask questions that you donâ&#x20AC;&#x2122;t know how to answer. Having a parent with cancer can make you feel different and that is not always easy to handle.

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Heart Stuff/Talking is tough

Cancer is a tough topic to talk about (no kidding!!!). You may have stuff that you want to know but you’re not sure how to ask your parent. Your parent may not be ready to talk or perhaps your parent wants to talk but you are not ready to listen or talk to them. While lots of pamphlets and videos show families all sitting around talking and sharing their innermost thoughts, the reality is not all families talk openly and honestly about things that are happening or their feelings. A cancer diagnosis isn’t going

to miraculously change that. In fact it is probably only going to make it more difficult. But difficult things can become more difficult if everyone goes around thinking about it, but not sharing how they are feeling and talking about what is really going on. The trick is to find ways that you can talk and communicate. You may be surprised how much better it is when things are talked about. You’ve heard it before but not talking about it won’t make it go away. Lots of things can get in the way of talking openly.

Things to think about There is no right or wrong way to talk about things. Let your parent know that you want to know what is going on. Your parent might not want to talk about their cancer because they don’t want to worry you. Maybe your parent doesn’t have all the information themselves. Let them know that you would like them to share the information once they have it. Good or bad. It can be difficult to talk about the situation if there is a big gap between what you want to talk about and what your parent wants to talk about. 23

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Heart Stuff/Talking is tough

However there is this policy called â&#x20AC;&#x153;patient confidentialityâ&#x20AC;?. Your parentâ&#x20AC;&#x2122;s doctors are not able to tell you stuff about your parentâ&#x20AC;&#x2122;s treatment or their prognosis (what the outcome may be) without your mum or dadâ&#x20AC;&#x2122;s permission.

It may be easier for you to talk to someone else in your family or even someone outside the family. This is OK. Think about people who you trust and feel comfortable with. (See â&#x20AC;&#x153;Getting TVQQPSUw PO QBHF

Talking Tips It may help to think about what you want to ask and what you want to say before you start. It may be really hard to start with and there may be lots of silent moments. Thatâ&#x20AC;&#x2122;s OK.

Try not to worry about it too much â&#x20AC;&#x201C; this whole thing is strange and scary and it may take time to work out the best way to talk to each other.

If talking is too hard Sometimes talking is too hard but you still want your mum or dad to know how you are feeling. These may help: t 5SZ XSJUJOH B MFUUFS t 'JOE DBSET UIBU TBZ XIBU ZPV NBZ CF GFFMJOH t 4FOE BO 4.4 t 'JOE RVPUFT UIBU ZPV mOE JOTQJSJOH BOE TIBSF them with your mum or dad. t %SBX

When you want to know more If it is information that you need, then you can do some research yourself or speak to the doctors, nurses or social workers.

For some parents not telling the whole story is a way of protecting you. Closing the gap between what your parents want you to know and what you want to know can take some delicate negotiating.

Top Tips:

Talking can be easier if you are doing something else at the same time â&#x20AC;&#x201C; driving in the car, cleaning up in the kitchen.

Expect a lot of mixed or confusing emotions

Try not to freak if you or your parent gets upset â&#x20AC;&#x201C; this is not an easy thing to be talking about.

How to get around it? You can ask your parents to give the doctor permission to give you information. But be aware if your mum and dad has told the doctor that they do not want you know some things then the doctor has to obey those wishes.

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Heart Stuff/Supporting your parent

You don’t need to be a genius to figure out that having cancer can really mess with your life.

This can be treated by a doctor. (See “When JU BMM TFFNT UPP NVDIw PO QBHF GPS TPNF warning signs.)

Knowing how your parent is feeling about it could help you figure out how to support them or at least understand where they coming from.

Scared

It may surprise you but your mum or dad is probably feeling many of the same things you are.

Your parent may be afraid of how their cancer will change their life as well as the lives of the rest of the members of your family. Treatment can also be a scary thing; your mum or dad may even be frightened that they will die.

Sad or depressed

Anxious

Your mum or dad may not be able to do the things they used to do and they will miss these activities. Just as your friends may not know what to say to you, your parent may have the same issue with their friends.

There are lots of things that could cause your parent to worry; how they are going to go to work, pay bills, how the treatment will affect them and how they will look. And like all other parents they are probably worried about how you’re doing.

Depression (as opposed to just feeling down) is not uncommon for people diagnosed with cancer.

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Heart Stuff/Supporting your parent

Angry Cancer treatment and its side effects can be very difficult to go through. Your parent’s anger can sometimes come from feelings that are hard to express like frustration and fear. Try to remember that they are most likely angry at the cancer and not at you.

Lonely Having cancer can be a lonely experience and your mum or dad may feel a bit isolated. They may find that their friends have a hard time dealing with their cancer and don’t visit, or they may be too sick to do things that they used to do.

They may also feel that no-one understands what they are going through and that they need to hide their feelings. Does a lot of this sound familiar?

How can you help? Firstly, remember you are not responsible for making everyone happy or for solving everyone’s problems. There are some things that you can do that will help and this might make you feel like you are better supporting your parent.

One thing I have learnt from this experience is... never assume the worst, always think of the positives and always look forward to the future.

Be positive This can be good for you and your family, but don’t feel like you have to be upbeat all the time, especially if that is not how you feel. Looking for the positive in things can make a difference. Just being yourself is OK.

Be patient You and your parents are under a lot of stress. Routines may have changed and your parent

may not behave in ways that you are used to. Try and understand that and be patient with them and yourself. If you find it is getting too much, take a walk, listen to some music or just find some space for yourself. 4FF i8IBU T B DPQJOH TUSBUFHZ w PO QBHF GPS more ideas.)

Help out at home Depending on which parent has cancer, the extra things you may need to do could vary. They may involve helping out with younger brothers and sisters, cooking meals, doing the washing. You may also need to be around the house

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Heart Stuff/Supporting your parent

more, especially if both of your parents are spending time at the hospital. Often it is the really small things that can make a big difference. Sometimes it is just doing something without being asked.

Spend time with them Just hanging out with your parent can really help. You could watch TV together, read to them or find something to laugh about. Things will change in your life and you may feel that you need to be around your mum or dad a lot more. But it is still OK to do the things that you did before they got sick. Remember: You and your needs still count.

Remember: You and

your needs still count.

Visiting your parent t 8JMM UIFZ CF DPOOFDUFE UP any machines? Hospitals can be freaky places at the best of times. (Well, t 8JMM UIFZ IBWF UVCFT maybe not for everyone.) They drips or other stuff attached may feel even more so when to them? your parent is having treatment. t 8IBU XJMM JU TNFMM MJLF Knowing what is happening to t "N * BMMPXFE UP UPVDI UIFN them and understanding what to expect when you go to visit t %PFT UIF NFEJDBUJPO BGGFDU can help make it less stressful. their speech or hearing? Before you visit you might like t 8JMM UIFZ TFFN B CJU iPVU to know a few things. You can of itâ&#x20AC;?? get this info from another adult, Remember: Your mum or dad the doctor, an older brother or is still the same person even sister or another relative: though they are sick. Your mum or dad is still interested in what is going on with you and will still want to be your parent (they may still even expect you to clean your room or stay in on a Friday night).

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Heart Stuff/Supporting your parent

Here are some things to make visiting easier: t 5BLF ZPVS IPNFXPSL UP EP XIJMF ZPV WJTJU o that way you have something to focus on other than all the medical stuff. t *G ZPV IBWF BDDFTT UP B %7% PS WJEFP QMBZFS in the hospital room you could take a movie to watch. t %P UIF DSPTTXPSE UPHFUIFS PS UBLF B CPBSE PS card game.

t 5BLF JO UIFJS GBWPVSJUF GPPE or get take-away delivered. (Just check that they are not feeling sick because this could turn them off their favourite food forever.)

When visiting is too hard

There may be practical reasons that make visiting hard: you t $BUDI VQ PO TPNF TMFFQ JO UIF WJTJUPS T DIBJS o have other commitments like sport training, too much school just being in the room can be a comfort to work, exams or work. Visiting your parent. hours in some hospitals make it t 5BLF TPNF NVTJD UP MJTUFO UP PS UIF OFXTQBQFS hard to fit it all in. Don’t be hard or a trashy magazine to read. on yourself if you can’t get to visit all the time. Sometimes you just can’t face visiting. This is OK. But you can still stay in touch by phone, sms or even by writing a letter. If you find that you just can’t visit at all, then you may need to find someone to talk to about this.

Remember:

Remember: Life doesn’t stop when you have a parent living with cancer.

Your mum or dad is still the same person even though they are sick. 28

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Heart Stuff/All about you

While everyone is worried about your parent who has cancer, it is really important that you take the time to look after yourself. It’s not selfish because if you don’t take care of yourself then you can’t take care of anyone else. You’ll need all your strength to get through the tough times.

Taking care of your body You’ve probably heard it all before; eat and drink well, stay away from smoking, drinking and drugs and get enough sleep.

That all may seem easier said than done with everything else going on in your life right now. Plus you may not really get why it is so important. Basically, your body needs the right fuel to keep it going. If you start to skip meals or don’t get enough sleep your brain can get that foggy feeling and it just makes everything else harder to deal with.

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Heart Stuff/All about you

If youâ&#x20AC;&#x2122;ve ever seen a baby scream because itâ&#x20AC;&#x2122;s hungry or grizzle because itâ&#x20AC;&#x2122;s tired, youâ&#x20AC;&#x2122;ll get the picture. You might not do the same things but your body will still start to feel bad. The idea is to make it easier â&#x20AC;&#x201C; not harder â&#x20AC;&#x201C; for yourself. These things are a good starting point: t &BUJOH XFMM UISPVHIPVU UIF EBZ t (FUUJOH FOPVHI TMFFQ t )BWJOH SFHVMBS FYFSDJTF

Taking care of your mind As well as having a healthy body, your mind needs looking after as well. Things to do: t -FBSO IPX UP SFMBY t 5BLF UJNF UP DIJMM XJUI your friends.

t 8SJUF ZPVS UIPVHIUT BOE feelings down (check out the journal and other spaces to scribble in this book or start an online blog). t Find others who are in the same situation as you at www.nowwhat.org.au

t %FBM XJUI UIJOHT TP UIBU ZPV donâ&#x20AC;&#x2122;t spend time and energy worrying about them. t 5BML UP QFPQMF BCPVU IPX you are feeling.

t 5BLJOH UJNF PVU UP SFMBY and unwind. t -BVHIJOH t 4FFJOH B EPDUPS XIFO ZPV are not feeling well.

Top Tips

You

are stronger than you

think 30

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Heart Stuff/When it all seems too much

When you are living with a parent who has cancer, it is normal for everyday things to seem hard and for you to have a whole heap of mixed emotions. However sometimes things can start to seem like they are out of control and it can feel like it is all too much. Itâ&#x20AC;&#x2122;s really important to recognise some of these warning signs and to get some help.

Depression People experience depression and depressed moods in different ways. Some common symptoms are: Mood t 'FFMJOH TBE NPPEZ PS DSBQ t 'FFMJOH HVJMUZ BOE CMBNJOH yourself. t 'FFMJOH IPQFMFTT PS IFMQMFTT t 6OBCMF UP GFFM HPPE PS FOKPZ things that you do normally. t 1PPS DPODFOUSBUJPO BOE memory. t #FMJFWJOH UIBU ZPV DBO U cope and that things are out of control. 31

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Heart Stuff/When it all seems too much

Behaviour t /PU IBWJOH NPUJWBUJPO and energy. t $SZJOH B MPU t *ODSFBTFE VTF PG ESVHT or alcohol. t 8JUIESBXJOH GSPN GSJFOET and family.

Unhealthy ways to deal with stress and tough times A lot gets written about positive ways to deal with stress, but we all know that there are other ways that you can try to cope that arenâ&#x20AC;&#x2122;t exactly so healthy or helpful. Donâ&#x20AC;&#x2122;t let the fear of people possibly judging you stop you from asking for help. /P POF XJMM KVEHF ZPV JG ZPV BSF EPJOH BOZ PG UIFTF 4UBZJOH TBGF and healthy is more important.

Physical t -PTJOH ZPVS BQQFUJUF PS overeating. t $IBOHFT JO ZPVS TMFFQ patterns â&#x20AC;&#x201C; waking up during the night or sleeping more than normal. t )BWJOH IFBEBDIFT PS stomach aches. t 'FFMJOH QIZTJDBMMZ TJDL Many of these symptoms may be just part of dealing with the stress and a normal reaction to dealing with a parent who has cancer, but if these feelings last for more than two weeks and they start to interfere with things that you used to enjoy, then you may be depressed. Try not to panic â&#x20AC;&#x201C; there is help out there for you. Check out the websites and phone numbers in the â&#x20AC;&#x153;Where to get helpâ&#x20AC;? section on page 78.

At the start I really wish I knew...

that cancer can be cured.

If you are into any of the following, you may be at risk of doing yourself some long-term damage. Find someone you can trust to share what is happening or use the â&#x20AC;&#x153;Where to get helpâ&#x20AC;? section on page 78.

Drugs and alcohol You may start using drugs and or alcohol to cover up the pain or try to make it go away. Or you may simply use them to wipe out or escape from what is happening for you. Without the lecture, this is only ever going to be a short term fix.

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Hurting others Feeling angry when your parent has cancer is OK. Anger sometimes covers up all the other emotions going on underneath. If you donâ&#x20AC;&#x2122;t think you have a safe place to express yourself you may turn your anger on others. Anger is a natural emotion but violence towards others is never an OK way to deal with it. There are better ways to express your anger that donâ&#x20AC;&#x2122;t involve hurting others.

Deliberate self harm This is when you deliberately harm yourself, usually in secret. This can involve cutting, burning, pulling out your hair, scratching yourself or picking at sores on your skin. Often it is used to cope with difficult or painful feelings. Itâ&#x20AC;&#x2122;s also a way of trying to tell people that you need some support or feel out of control.

Top Tips

As tempting as it may be for you to use this as a coping strategy, it will not help you in the long term and in fact will only do you harm.

Ask questions even if you are scared to do so

Heart Stuff/When it all seems too much

Deliberate self harm can give you an instant sense of relief but it is only a temporary solution. You can be left with permanent scars and ongoing issues with your mental health.

Safe ways to act out feelings (especially anger) t 1VODI B QJMMPX o VTF ZPVS hands, a stick or anything else you can get your hands on. t $IVDL B UBOUSVN PO ZPVS CFE or in your room. t (P GPS B SVO QPVOEJOH the pavement is better than beating up on yourself or someone else. t 8BUDI B TBE NPWJF o XIBU a good excuse for a great big cry! t 'JOE B QSJWBUF TQBDF BOE SCREAM at the top of your lungs. t 5BLF B MPOH TIPXFS TIII donâ&#x20AC;&#x2122;t tell the water restriction guys) and cry, sing or yell while you are in there. Remember: Having a parent with cancer sucks, but you are not alone and there are people who will understand and can help. 33

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Heart Stuff/Getting support

Asking for help can be a pretty scary thing to do. It may mean having to: t AGFTT VQ UP OPU CF EPJOH BT XFMM BT ZPV XPVME like to be (or are pretending to be)

/P TFSJPVTMZ UIFZ XJMM MPPL EJGGFSFOU GPS different people but will probably have some things in common. A good support person will: t MJTUFO UP ZPV

t PQFO VQ BCPVU XIBU T HPJOH PO

t OPU KVEHF ZPV

t UBML BCPVU UIJOHT UIBU BSF IBSE

t CF UIFSF XIFO ZPV OFFE UIFN

t BENJU UIBU ZPV EPO U IBWF BMM UIF BOTXFST

t LFFQ UIJOHT QSJWBUF JG BOE XIFO ZPV BTL

t CF IPOFTU BOE MFU ZPVS HVBSE EPXO

t CF IPOFTU XJUI ZPV

But unlike lots of other stuff that you have to deal with, having a parent with cancer is off the radar for most young people. Itâ&#x20AC;&#x2122;s not something that you may have ever thought about, let alone read anything about or chatted to friends about.

t IBWF B TFOTF PG IVNPVS

Faking the â&#x20AC;&#x153;Iâ&#x20AC;&#x2122;m OKâ&#x20AC;? thing is going to be a whole lot harder.

It may take a few shots at finding the right person, but itâ&#x20AC;&#x2122;s worth making the effort.

What does a good support person look like?

Parents

Well theyâ&#x20AC;&#x2122;ve got really big hair, wear long flowing skirts, burn candles and are as old as your grandmother.

t OPU BMXBZT UFMM ZPV UIBU UIFZ LOPX IPX you feel.

Who can you get support from?

You may find that your â&#x20AC;&#x153;wellâ&#x20AC;? parent is able to offer you all the support you need just because they know you and are around all the time. But remember they have a lot to deal with and you may have to be brave and ask for their support. The same goes for your parent who has cancer.

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Rememb

er:

"TLJOH GPS IF MQ EPFTO U NFB O ZPV WF GBJMF expects you E /P POF to get throug h th is on your ow people really n and other do want to he lp.

Other relatives Sometimes you get on better with an aunt, uncle or grandparent than you do with your parents. (Thatâ&#x20AC;&#x2122;s OK.) Maybe you have things in common, are closer in age (alright not with your grandparents) or they just get you. Use these people to get support.

Counsellor You donâ&#x20AC;&#x2122;t have to be crazy to see a counsellor. They will listen to you and you can say things to them that you may not want to say to anyone else. The best thing is that you canâ&#x20AC;&#x2122;t hurt their feelings or piss them off. They are skilled in helping to work out ways to cope with anger, sadness and fear.

GP Your family doctor may have known you and your family for a while, so they might understand what is happening for you. Doctors not only treat physical problems but can help with offering you support. You donâ&#x20AC;&#x2122;t need your parentâ&#x20AC;&#x2122;s permission UP TFF B EPDUPS JG ZPV BSF PWFS

Teacher Maybe there is a particular school teacher you have a good relationship with. Donâ&#x20AC;&#x2122;t be afraid to let them know what is going down. They work with young people all the time and are usually great listeners and can be an advocate (someone who is on your side) at school.

Friends Some friends may be great at giving you just what you need but you may need to ask. Just having people know what is happening can help.

Religious leaders Priests, pastors, rabbis or other religious leaders are experienced in supporting people in their communities. You may already be involved in a youth group. They may be able to give you just what you are looking for.

Support groups Sounds lame? There are organisations that work with young people who are in the same boat. This might not grab you at first (others have said the same thing) but once you actually go you might change your mind. It is said that the best support comes from those who have been there and done that. CanTeen, the organisation for young people living with cancer, has great programs that offer support. Check out the website www.canteen.org.au 35

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Heart Stuff/Coping strategy

t 'JOE XBZT UP IBWF B MBVHI t 8IFSFWFS QPTTJCMF LFFQ doing the things that you like â&#x20AC;&#x201C; playing sport, exercising, hanging out with friends. t -FBSO IPX UP NFEJUBUF o you will be amazed at how good this feels. t 5BQ JOUP ZPVS TQJSJUVBMJUZ â&#x20AC;&#x201C; not just traditional religion but anything that may give you comfort.

â&#x20AC;&#x153;Coping strategyâ&#x20AC;? is a fancy term for those thoughts and actions that help you deal with the tough stuff that having a parent with cancer throws at you.

Here are a few that may help:

Do I need one?

t (FU TPNF UJNF PVU UIBU doesnâ&#x20AC;&#x2122;t mean getting sent to your room!).

Yep â&#x20AC;&#x201C;in fact you may need a few and they may be different than the ones you have used for other things (like exams or hassles with friends). We all deal with things in different ways but developing some good coping strategies can help you stay on top of things.

t 5BML o FYQSFTTJOH IPX ZPV are feeling is better than bottling it up. t "TL MPUT PG RVFTUJPOT BOE write the answers down.

t &BU DIPDPMBUF t $IFDL TUVGG PVU PO UIF Internet. t 8SJUF B KPVSOBM CMPH

t (FU PSHBOJTFE FTQFDJBMMZ if you have taken on extra roles. Things like a weekly planner and a to-do list can really make things more manageable (and no, itâ&#x20AC;&#x2122;s not a lame thing to do). t &BU DIPDPMBUF t 0GnPBE TPNF PG UIF UIJOHT that you have to do â&#x20AC;&#x201C; ask for help (this is really hard but really important). t "OE mOBMMZ FBU DIPDPMBUF (alright not too much and get some fruit and veggies as well).

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Heart Stuff/Not a saint

saint There is a whole lot of stuff out there about how being “touched by cancer” can somehow make you into a saint, cause you to give up all your bad habits and find the answer to the universe. It is true that many young people say that the experience has taught them stuff they didn’t know, made them appreciate the little things more and helped them find a strength that they didn’t know they had.

So... t JU T OK not to feel special t JU T OK to still get cross with your parent and have all the normal parent-child issues t JU T OK to not feel really brave and think that the whole experience will be good for you t JU T OK to think the whole thing sucks t JU T OK to come out the other end of this still being the same, faults and all.

But for some of you, the expectation that this is how it should be is a really hard thing to live up to.

Remember Everyone deals with things their own way and learns different things from the same experience. 37

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Heart Stuff/Grief and loss

There is heaps of grief and loss around living with a parent who has cancer. Often we only think about grief and loss in terms of someone dying but in fact you could have these feelings even though your mum or dad is living with their cancer. Loss is what happens; grief is how we feel about it. You can think of loss as any event or thing that changes the way things have been. It is sometimes described as that point in time after which everything is different. For many of you the first time this happens is when you are told about your parent’s cancer. Life may never be the same again. Or it can happen at other times along the cancer journey. Some losses will really knock you about while others may not have such a big impact. It depends on what sort of changes it will mean for your life and how you feel about them. Examples of losses that you may experience as a result of your parent’s cancer: t :PV MPTF DPOUBDU XJUI GSJFOET CFDBVTF ZPV can’t go out as much or you don’t feel like doing the same things. t :PVS TDIPPM XPSL JT OPU VQ UP UIF TUBOEBSE ZPV are used to.

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Heart Stuff/Grief and loss

t .VN PS EBE DBO U XPSL TP there is a change in your financial situation. t (PJOH UP VOJ PS 5"'& JT UPP hard because you need to take care of your parent. t %BE PS .VN DBO U QMBZ sport with you because of their treatment. t :PV GFFM UIBU ZPV IBWF IBE to grow up a lot and you miss out on being just a regular kid. t " QMBOOFE IPMJEBZ XBT cancelled because of cancer treatment. t :PVS NVN PS EBE JT KVTU not the same after their cancer treatment. As you can see, there are lots of things that you can feel like you have lost because of what cancer can do to your family. Grief is a personal thing and no two people experience it the same way. Just like feelings, there is no right or wrong way to do it. What is important is to recognise when you may be experiencing grief and to learn positive ways to deal with it.

The most useful piece of information that I got was It wasnâ&#x20AC;&#x2122;t my fault that the cancer happened. Itâ&#x20AC;&#x2122;s reassuring that you are not to blame for it.

These are some of the changes you may notice if you are experiencing grief and loss: t 8BOUJOH UP TMFFQ MPUT PS OPU CFJOH BCMF to sleep. t %SFBNT PS OJHIUNBSFT t &BUJOH IFBQT PS OPU XBOUJOH UP FBU NVDI t )FBEBDIFT t $SZJOH MPUT t "WPJEJOH QMBDFT UIBU SFNJOE ZPV PG XIBU ZPV may have lost. Putting a lid on it and hoping it will go away isnâ&#x20AC;&#x2122;t always the best way to deal with it. (Have you gotten the message yet that this is the same for all sorts of things that you experience when living with a parent who has cancer?) Check out these other sections in the book for ways to take care of yourself: â&#x20AC;&#x153;Whatâ&#x20AC;&#x2122;s a coping strategy?â&#x20AC;?, â&#x20AC;&#x153;All about youâ&#x20AC;? and â&#x20AC;&#x153;Getting supportâ&#x20AC;? will give you more info. 39

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Heart Stuff/Beyond cancer

much time to even think about what will happen when the doctors finally say that the treatment has finished. The end of treatment can bring up a whole bunch of emotions, much like when your parent was first diagnosed. You might be so relieved that it’s over and then get mad when you realise that it really isn’t. Even when the cancer treatment has finished there can be short and long term side effects which can continue to have an impact on your family. Getting over cancer treatment takes time. In general, it will take longer for your parent to recover than the time it took to treat them. This can be very frustrating for you and your mum or dad.

Thinking too far ahead is generally pretty hard when you are young, even on the good days. When mum or dad gets cancer, it probably gets even harder.

Cancer and its treatment can leave the body pretty beaten up (not to mention the mind). Your mum or dad may find they have to deal with:

You have probably been so focused on doctors, drugs and getting by that you haven’t had

t iDIFNP CSBJOw o NFNPSZ BOE DPODFOUSBUJPO problems. These can pop up months or years after treatment

t CFJOH UJSFE o TPNFUJNFT DBMMFE iGBUJHVFw it’s not just normal tired that sleep can fix. It can be “tired” for days and days

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Heart Stuff/Beyond cancer

t EFBMJOH XJUI ZPVS QBSFOU T physical changes; they may look different, have scars, be bald or their hair is not the same, or they may t QBJO o POHPJOH GSPN TVSHFSZ even be missing an arm, radiotherapy and chemo leg or breast. t NPVUI BOE UFFUI QSPCMFNT – especially if they had radiotherapy to the head and neck t DIBOHFT JO UIFJS XFJHIU and their eating habits t MZNQIPFEFNB PS TXFMMJOH o this is when an arm or a leg swells. Some of the things that may become issues for you are: t GFBS UIBU UIF DBODFS XJMM recur (come back)

For you, there can be a real sense of loss (and possibly anger) that your parent is not the same person they were before they got sick. One of the hardest things after the treatment has finished is not knowing what happens next. There may be the expectation that things will just get back to normal – but what is normal and will things ever be the same?

There will certainly be a time of re-adjustment. You may feel that you have just got the hang of the new responsibilities and then suddenly you don’t have to do them anymore. You may find that you have more time on your hands or that your mum and dad are around more because treatment has finished. Just like all the other phases that you have gone through so far, it will take some negotiation, heaps of patience and above all communication to adjust to life after treatment.

t TFFJOH ZPVS NVN PS EBE TUJMM weak and sick

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ANC

NS C

Heart Stuff/If cancer returns

TU R

Some of you may have to face the fact that your mum or dadâ&#x20AC;&#x2122;s cancer has come back. This can be really tough and come as a big shock. Many of the emotions you felt when you first heard they had cancer will come crashing back. Understanding what it means can help.

What is a cancer recurrence/ relapse?

Where does cancer recur?

A cancer is considered to have recurred when the cancer returns after your parent has been in remission. (When there is no evidence of cancer in the body). This happens because sometimes some cancer cells were left behind despite the treatment that they received or brand new cancer cells develop.

5IFSF BSF UZQFT PG SFDVSSFODF

A cancer recurrence can mean itâ&#x20AC;&#x2122;s the same cancer coming back or in rare cases the cancer may be a completely new cancer.

Local recurrence: The cancer reappears in the same place it was first found, or very close by. The lymph nodes or other parts of the body are not affected. Regional recurrence: This happens in the lymph nodes and the tissue in the area of the original cancer. Distance recurrence: This is when the cancer has spread (metastasised) to other areas in the body.

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Heart Stuff/If cancer returns

Top Tips Do your best to be positive for yourself and your family

Can cancer recurrences be treated? Local recurrences may still be curable however cancers that recur at a site distant from where the original cancer occurred may be more difficult to treat. What treatments your mum or dad receive or choose to receive will depend on things like where the recurrence is and what they may be prepared to go through again. This may be really hard for you as you may feel like you have no control over the decisions that your parent makes and you may be very scared about what will happen. Like all the other stages you have been through with your parentâ&#x20AC;&#x2122;s cancer, getting the right information is really important. Ask people to be honest with you about what is happening.

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Heart Stuff/If treatment doesn’t work

You might even feel despair – an emotion that you’ve never felt before. It is just It is important to remember that a feeling of hopelessness, just because your mum or dad like you are completely lost is receiving palliative care this and useless. This is a really doesn’t necessarily mean that tough one to cope with. they are going to die soon. This time sucks so bad you This stage can last from as Sometimes it doesn’t might feel completely alone little as a week to a year matter how hard your at times, really angry with the or more. Each situation is parent fought, how world, your parent, the doctor, different. Again, make sure positive you all have the nurse or some random you ask someone you trust been or how many walking down the street – to explain exactly what is different treatments because they look healthy and going on for your parent. the doctors tried, some it feels really unfair. Yep people cannot be cured. During this time you and your it feels like that because it is. family will have to face a lot If this is the case, active But don’t let that stop you from of new challenges. treatment and testing will be spending time with your parent, Some of the emotions and stopped and your mum or dad having fun, laughing, crying will be given medicines for pain feelings that you had when you and sharing your thoughts first found out about the cancer and to relieve other symptoms and feelings with them. may come back but there are like nausea and vomiting. also going to be a whole bunch Remember: There is no right These medicines are aimed or wrong way to feel or act of new ones and they could at making your parent when your parent is dying. be a lot stronger than before. as comfortable as possible. This stage is called palliative care or palliative treatment.

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Heart Stuff/If treatment doesn’t work

What is really important at this time is to ask as many questions as you need to. Ask your mum or dad, doctors, nurses, social workers. Ask people to be honest with you. They may think that you can’t handle it, but you know that you can and they will see that. Don’t expect to get it right, everyone is trying to do their best in a really tough situation. Be patient with each other.

At the start I really wish I knew... how difficult this would be.

Just keep talking to each other and know that your mum or dad still love you and don’t want to say goodbye and that the love will never stop. Some of you may want to make something together with your parent, maybe a picture, a scrap book, a video or something that you will treasure and that is just between you two. Remember: Only do what feels comfortable and right for you. And at this stage you will start to wonder, “What happens when…”. And there will be millions of “What happens when…” questions for you, other family members and your parent. But most of all, you are going to wonder “What happens when I don’t have the person with me to love, and be loved by, anymore?”.

er: emb ht or m e R o rig r

eel o e is n Ther way to f arent g p wron en your h w g in . act is dy

This could well be your toughest question ever. This is when a group like CanTeen (where you can connect with other young people who have faced the same crappy outcome), or a professional counsellor or psychologist could be of most use. “What happens when…” is a really scary moment for everyone. You will need some help for yourself. You will need to be there to help others like your other parent and siblings. You will need to have space and time. Asking can be hard – not asking can be even harder. All the tips and suggestions in the rest of the book are just as useful at this time. Get support, take care of yourself, and be aware of danger signs if it’s all getting too much and remember to be easy on yourself. For those of you who need more information about this stage in the journey www.nowwhat.org.au has more detail on this.

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Practical Stuff/School, study, work

You will have worked out by now that the rest of the world doesnâ&#x20AC;&#x2122;t stop because your world seems to revolve around cancer. Things like school, other study and work donâ&#x20AC;&#x2122;t go away, but trying to juggle it all may mean you risk dropping some of the balls.

t :PV IBWF MFTT UJNF UP HFU ZPVS IPNFXPSL EPOF CFDBVTF PG UIFTF FYUSB KPCT

School

t 'SJFOET BOE UFBDIFST NBZ BDU XFJSE

If youâ&#x20AC;&#x2122;re in school it forms a big chunk of your life. Having a parent with cancer can affect you at school in lots of ways: t :PV NBZ IBWF EJGmDVMUZ DPODFOUSBUJOH PO TUVGG CFDBVTF ZPV BSF XPSSJFE BCPVU NVN PS EBE t :PV NBZ CF UJSFE CFDBVTF ZPV BSF EPJOH FYUSB UIJOHT BSPVOE UIF IPVTF

t .PUJWBUJPO NBZ CF EPXO t :PVS XPSL NJHIU OPU CF VQ UP UIF VTVBM TUBOEBSE

While you might not want to be USFBUFE BOZ EJGGFSFOUMZ MFUUJOH your teachers know what is going on may mean they cut you some slack. It will help if ZPV EPO U IBWF UP QSFUFOE UIBU everything is OK.

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Practical Stuff/School, study, work

Years 11 & 12

Work

*G ZPV EPO U BTL ZPV XPO U LOPX

*G ZPV BSF EPJOH ZPVS mOBM TDIPPM FYBNT ZPV NBZ CF BCMF UP HFU iTQFDJBM DPOTJEFSBUJPOw JG ZPV IBWF NJTTFE XPSL because you have been looking after your parent or younger CSPUIFST BOE TJTUFST PS ZPV IBWF KVTU IBE B IBSE UJNF coping with it all.

What you tell your employer or work mates about your parentâ&#x20AC;&#x2122;s cancer is completely up to you. There is no law that says UIFZ OFFE UP LOPX )PXFWFS ZPV NBZ mOE UIBU UIFZ BSF TVQQPSUJWF BOE VOEFSTUBOEJOH especially if you have to UBLF UJNF PGG PS BSF KVTU IBWJOH B CBE EBZ

$IFDL PVU i8IFSF UP HFU IFMQw on page 76 for more info.

:PV XJMM OFFE UP TQFBL UP UIF school counsellor who can organise this for you. Remember: Itâ&#x20AC;&#x2122;s not bludging â&#x20AC;&#x201C; just recognising that things are really hard.

$IFDL XJUI ZPVS TVQFSWJTPS manager or human resources manager about your rights when it comes to taking time off. :PV NBZ CF FOUJUMFE UP DBSFS T leave or you can take sick MFBWF BOOVBM MFBWF PS UJNF PGG XJUIPVU QBZ UIJT TIPVME CF UIF absolute last resort) if you have to care for your parent or take them for treatment.

Other study *G ZPV BSF BU VOJ PS 5"'& UBMLJOH UP ZPVS MFDUVSFST UVUPST PS EFQBSUNFOU IFBET TIPVME IFMQ you to work out a strategy to DPQF XJUI ZPVS TUVEZ XPSL MPBE BOE XJUI SFDPHOJUJPO PG XIBU JT going on at home. .PTU DBNQVTFT IBWF B TUVEFOU TFSWJDFT DFOUSF UIBU QSPWJEFT DPVOTFMMJOH BOE TVQQPSU %PO U CF BGSBJE UP UBLF BEWBOUBHF PG XIBUFWFS JT PO offer to help you get through these tough times. Remember: It is best to deal with things before they hit crisis point.

One thing I have learnt from this experience is...

that

life

is what

you

make of it.

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Practical Stuff/Finances

From our experience we know that there are some of you who will have to deal with financial issues, banking, Medicare, private health funds, Centrelink and other exciting government departments. This can be really PWFSXIFMNJOH BOE TUSFTTGVM especially when you are USZJOH UP EFBM XJUI FWFSZUIJOH FMTF CVU UIFSF JT BMM TPSUT PG BTTJTUBODF BWBJMBCMF *U JT KVTU sometimes a matter of knowing XIBU UP BTL BOE XIP UP BTL

5IJOHT UIBU ZPV DBO HFU IFMQ XJUI JODMVEF t mOBODJBM BTTJTUBODF o ZPV NBZ CF BCMF UP HFU a Carerâ&#x20AC;&#x2122;s Allowance or Carerâ&#x20AC;&#x2122;s Payment t SFOU BTTJTUBODF t QIBSNBDFVUJDBM BMMPXBODF t DPODFTTJPO DBSET t QBSLJOH WPVDIFST BU UIF IPTQJUBM t BDDPNNPEBUJPO EVSJOH USFBUNFOU t USBOTQPSU DPTUT UP BOE GSPN IPTQJUBM Where to get more information: t "TL UIF TPDJBM XPSLFS BU UIF IPTQJUBM t 4QFBL UP UIF OVSTFT PO UIF XBSE PS JO the clinic. t $IFDL PVU XFCTJUFT BOE TVQQPSU TFSWJDFT JO UIF i8IFSF UP HFU IFMQw TFDUJPO PO QBHF 49

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Practical Stuff/Finances

Budgeting 4PNF PG ZPV NBZ mOE ZPVSTFMG SFTQPOTJCMF GPS UIF IPVTFIPME CVEHFU XIJMF ZPVS QBSFOU JT CFJOH USFBUFE GPS DBODFS 5IJT DPVME CF BT TJNQMF BT IBWJOH UP EP UIF XFFLMZ TIPQQJOH PS JU may mean having to look after BMM UIF mOBODFT GPS UIF GBNJMZ Knowing how much you have UP TQFOE BOE XIBU ZPV OFFE UP TQFOE JU PO XJMM NBLF JU B whole lot easier. Thatâ&#x20AC;&#x2122;s what B CVEHFU JT Here are a few tips that can help you tackle this. t " HPPE JEFB JT UP MJTU BMM UIF UIJOHT UIBU ZPV OFFE UP CVZ BOE QBZ GPS PO FJUIFS a monthly or weekly basis.

t "OPUIFS XBZ UP BWPJE UIF MPUT PG GPPE CVU OPUIJOH UP eat trap is to work out what ZPV BSF HPJOH UP FBU DPPL GPS UIF XFFL NBLF B MJTU PG BMM UIF UIJOHT ZPV OFFE BOE UIFO make sure you buy it all. t 4VQFSNBSLFUT BSF DIFBQFS than convenience stores.

t %PO U QVU UIF FOWFMPQFT XJUI UIPTF MJUUMF TFF UISPVHI XJOEPXT JO UIF UPQ ESBXFS BOE GPSHFU BCPVU UIFN They are most likely bills BOE XPO U HP BXBZ KVTU t (FU B DBMFOEBS BOE XSJUF CFDBVTF ZPV EJEO U PQFO on it when the regular bills UIFN 0S UIFZ DPVME CF DPNF JO BOE OFFE UP CF QBJE PGGFST GPS DSFEJU DBSET UIBU ZPV EPO U XBOU PS OFFE o t 8IFO ZPV BSF EPJOH UIF JO UIBU DBTF CJO UIFN

TIPQQJOH NBLF B MJTU BOE stick to it. Having a trolley Remember: You donâ&#x20AC;&#x2122;t have GVMM PG 5JN5BNT BOE JDF to do all of this on your own DSFBN BOE UIFO OP NPOFZ and it is OK not to know GPS NFBU BOE WFHHJFT BOE how to do things. Donâ&#x20AC;&#x2122;t be no loo paper) isnâ&#x20AC;&#x2122;t so smart. afraid to ask for help. t "MXBZT QVU BTJEF NPOFZ GPS UIF FTTFOUJBM UIJOHT mSTU MJLF GPPE SFOU NPSUHBHF QBZNFOUT FMFDUSJDJUZ BOE health care.

Top Think Tips

OF the positives

before

the

negatives

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Practical Stuff/Feed yourself

If you havenâ&#x20AC;&#x2122;t already got the message, then we will say it again TO BE GOOD AT LOOKING AFTER SOMEONE ELSE, YOU HAVE TO LOOK AFTER YOURSELF FIRST! That means you need to get healthy, and stay healthy by learning how to feed yourself some really good food. If you now have the job of feeding your whole family, then they will get a health bonus as a result of your new cooking skills.

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&BUJOH GBWPVSJUF GPPET XIFO you are sick or nauseous can sometimes turn you off UIFN TP TFSWF UIFTF EJTIFT on special occasions or DFMFCSBUJPOT XJUI GSJFOET BOE family when your parent feels better.

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)PTQJUBM GPPE DBO CF BXGVM TP QSFQBSF TPNF IPNFNBEF NFBMT UIBU DBO CF SFIFBUFE JO B NJDSPXBWF PS FBUFO DPME

4PNF ESVHT BOE DIFNP DBO NBLF GPPE UBTUF NFUBMMJD TP TFSWF EJTIFT XJUI QMBTUJD VUFOTJMT DIPQ TUJDLT PS porcelain spoons. 'SFTI WFHFUBCMFT BOE GSVJUT can be easier to eat when they BSF KVJDFE CVU TPNF BDJEJD KVJDFT MJLF UPNBUP DBO IVSU JG the person has mouth ulcers. %SJOLJOH XJUI B TUSBX PS BEEJOH BMPF WFSB KVJDF ZPV DBO HFU UIJT GSPN IFBMUI GPPE TUPSFT might help. $MFBS CSPUIT BOE TPVQT NBEF XJUI GSFTI PSHBOJD JOHSFEJFOUT DBO QSPWJEF QMFOUZ PG OVUSJUJPO BOE BSF FBTZ UP FBU .BLF MPUT BOE GSFF[F TPNF GPS MBUFS

3FTFSWF POF ADPPLJOH EBZ B week to make big batches of GBNJMZ GPPE UIBU DBO CF GSP[FO UIFO SFIFBUFE PS BEEFE UP MVODI CPYFT XJUIPVU UPP much effort. 4NBMM NFBMT PO B OJDF QMBUF JO B lovely setting can be less scary UIBO B IVHF QMBUF QJMFE IJHI 5BLF UIF UJNF UP SFMBY FBU XFMM BOE MPPL BGUFS ZPVSTFMG BOE BMXBZT BTL GPS IFMQ o FWFO CFGPSF ZPV OFFE JU

Top Tips:

WFSZ JNQPSUBOU FTQFDJBMMZ XIFO TPNFPOF JT JMM #VU TPNFUJNFT QSPUFJO DBO CF EJGmDVMU UP EJHFTU TP QSPUFJO QPXEFS DBO CF TQSJOLMFE PO PS BEEFE UP NPTU GPPET BOE OPO NFBU sources like tofu are pretty easy to use.

Find a way to escape â&#x20AC;&#x201C; be it reading, listening to music or do something like drawing or writing. Sometimes you just need to get away from everything

Practical Stuff/Feed yourself

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Practical Stuff/Feed yourself

Ingredients 2 teaspoons olive oil CSPXO POJPO DIPQQFE 400 g lean beef mince Y H KBS PG CPMPHOBJTF QBTUB TBVDF DBSSPU mOFMZ DIPQQFE DFMFSZ TUJDL mOFMZ DIPQQFE 375g spaghetti :PV DBO MFBWF UIF WFHHJFT PVU BOE JU XJMM TUJMM UBTUF HPPE

Method

Easy Spaghetti Bolognaise 4QBHIFUUJ CPMPHOBJTF JT B EJTI BMNPTU FWFSZPOF XJMM FOKPZ o FTQFDJBMMZ JG UIF TBVDF JT QBDLFE XJUI HSFBU JOHSFEJFOUT BOE DPPLFE XJUI MPWF 0G DPVSTF CPMPHOBJTF DBO BMTP CF VTFE JO EJGGFSFOU XBZT TP NBLF B IVHF CBUDI BOE VTF JU GPS NPSF UIBO POF NFBM 4FF NPSF JEFBT BU UIF FOE PG UIF recipe instructions. Serves 4 Preparation Time: 10 mins Cooking Time: 30 mins

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Tools 4IBSQ LOJGF DIPQQJOH CPBSE

)FBU UIF PJM JO B TBVDFQBO PWFS NFEJVN IFBU BOE GSZ UIF POJPO VOUJM JU JT TPGU BOE DIBOHFT DPMPVS

)FBWZ CBTFE MBSHF TBVDF QBO GPS TBVDF

-POH IBOEMFE TUJSSJOH TQPPO BOE MBEMF

Large saucepan (for pasta)

%SBJO JO B DPMBOEFS "EE B MJUUMF CJU PG PJM UP TUPQ it sticking together.

$PMBOEFS #PXMT GPSLT BOE TQPPOT GPS FBUJOH

8IJMF UIF TBVDF JT DPPLJOH mMM B MBSHF TBVDFQBO XJUI XBUFS BEE B MJUUMF TBMU #SJOH UP UIF CPJM BOE UIFO BEE UIF TQBHIFUUJ BOE DPPL VOUJM BM EFOUF 4FF OPUFT GPS FYQMBOBUJPO

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Practical Stuff/Feed yourself

8IFO UIF TBVDF JT DPPLFE DIFDL JG JU OFFET BOZ TBMU BOE QFQQFS To serve place some spaghetti JO B CPXM BOE TQPPO TPNF sauce over the top. 4QSJOLMF XJUI HSBUFE DIFFTF

Notes "M EFOUF <BM %&/ UBZ> JT BO Italian phrase meaning â&#x20AC;&#x153;to the UPPUI w VTFE UP EFTDSJCF QBTUB PS PUIFS GPPE UIBU JT DPPLFE only until it offers a slight SFTJTUBODF XIFO CJUUFO JOUP CVU XIJDI JT OPU TPGU PS PWFSEPOF Any leftover sauce can be GSP[FO UIFO SFIFBUFE JO UIF microwave for a quick pasta sauce or to put on UPBTU GPS CSFBLGBTU

Lasagne o MBZFS B CBLJOH EJTI XJUI CPMPHOBJTF JOTUBOU MBTBHOF TIFFUT DIFFTF TBVDF BOE MBZFS BHBJO JO UIJT PSEFS UPQ XJUI HSBUFE NP[[BSFMMB BOE DIFEEBS DIFFTF UIFO CBLF BU oC for 40 minutes. A Bigger Batch o BEE H NPSF NJODF NPSF DBSSPU BOE BOPUIFS KBS PG QBTUB TBVDF

Quesadillas o DPWFS B UPSUJMMB with bolognaise then top with TMJDFE SFE PS HSFFO QFQQFST HSBUFE DIFEEBS DIFFTF BOE another tortilla. Brown both TJEFT JO B OPO TUJDL GSZ QBO PS UPBTU JO BO FMFDUSJD TBOEXJDI press (grill or snack maker).

Nachos o QVU B QJMF PG QMBJO corn chips onto a baking USBZ EPC PWFS TQPPOGVMT PG Tacos o MFBWF UIF TBVDF BT JU CPMPHOBJTF BOE HSBUFE JT PS BEE B TQSJOLMF PG DBZFOOF DIFEEBS DIFFTF UIFO QVU JO QFQQFS TQPPO JOUP IFBUFE UBDP the oven or microwave till TIFMMT BOE UPQ XJUI TMJDFE GSFTI the cheese melts. UPNBUP TISFEEFE MFUUVDF BOE HSBUFE DIFEEBS DIFFTF A Snack o MFGUPWFS TBVDF DBO CF SFIFBUFE BOE FBUFO PO UPBTU PS JO B UPBTUFE TBOEXJDI Check out the website www.nowwhat.org.au for NPSF SFDJQF JEFBT

6TF PSHBOJD JOHSFEJFOUT JG ZPV DBO UP BWPJE BOZ SFTJEVF PG DIFNJDBMT PS QFTUJDJEFT

Variations Chilli Con Carne BEE B DBO PG LJEOFZ CFBOT H EBSL DIPDPMBUF BOE UFBTQPPO PG DSVTIFE DIJMMJFT UP UIF TBVDF XIFO JU IBT OFBSMZ mOJTIFE cooking or to a batch you are SFIFBUJOH 4UJS UJMM UIF chocolate melts.

One thing I have learnt from this experience is... how to do more things, because I help so much and I know more things than some of the girls in my class.

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Med Stuff/What cancer is that?

There are over 100 different diseases that are referred to as cancer. This table lists the most common adult cancers. If your parent’s cancer is not listed you may need to ask your parents, the doctors or nurses or check out the websites listed on page 78 to find out more.

Type of cancer

Description

Incidence

Treatment

Bowel cancer

Bowel cancer can grow from either the inner lining of the bowel or from a small raised area called a polyp. Polyps are usually harmless, but some can become cancerous (malignant) and spread.

Bowel cancer is the most common form of cancer diagnosed in Australia.

Bowel cancer is highly treatable if found early even if it spreads to lymph nodes. If it has spread to other organs such as the liver it is more difficult to treat and cure. Treatment involves surgery and then occasionally chemotherapy or radiotherapy depending on the stage of the disease.

Breast cancer

Breast cancer develops when some of the cells in the breast begin to grow out of control. A cancerous growth then appears somewhere inside the breast. It is commonly detected by feeling a lump in the breast or surrounding tissue. Diagnosis is usually confirmed by a mammogram, ultrasound or biopsy.

Breast cancer is the most common form of cancer affecting women in Australia. It also affects men.

Treatment for breast cancer usually depends on where the cancer is, whether it has spread, the cancer’s growth rate and the person’s general status. Most breast cancers are treated either by surgery, radiotherapy, chemotherapy and hormone replacement therapy.

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Med Stuff/What cancer is that?

Type of cancer

Description

Incidence

Treatment

Lung cancer

Lung cancer is a cancer of the cells in the lungs. There are two types of lung cancer: small cell and non-small cell.

Lung cancer is the third most common cancer in men and the fifth in women in Australia.

Small cell cancer of the lungs is treated with chemotherapy and radiotherapy. Non-small cell cancer usually requires a combination of surgery, chemotherapy & radiotherapy.

Prostate cancer

Prostate cancer develops when the cells in the prostate gland form a tumour. (The prostate is a small gland the size of a walnut that sits below the bladder and surrounds the tube that carries urine from the bladder through the penis.) Most prostate cancer forms only within the prostate and it is slow-growing compared to other cancers. Therefore it can be detected earlier. It can spread to other parts of the body, and this is known as advanced prostate cancer.

Prostate cancer is the most common form of cancer in Australian men.

Treatment depends on age, how fast the tumour is growing and whether it has spread. The most common treatment includes surgery and radiotherapy. If the cancer has spread beyond the prostate then hormone therapy may be used.

The most useful piece of information that I got was...

what was going to happen, the side effects and where the cancer was. 56

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Med Stuff/What cancer is that?

Type of cancer

Description

Leukaemia

Leukaemia is cancer of the white blood cells (WBCs). Bone marrow and other blood forming organs produce abnormal numbers of white blood cells, stopping the production of normal blood cells.

Treatment

Acute lymphoblastic leukaemia (ALL)

ALL increases the number of WBCs called lymphocytes.

Treatment plans for ALL usually include chemotherapy and radiotherapy. This can be for up to 2 years. Some patients may also require a bone marrow transplant (BMT).

Acute myeloid leukaemia (AML)

AML increases the number of abnormal WBCs called myeloid cells.

Treatment plans for AML usually include 6 months of chemotherapy with 2-3 drugs in each course of treatment lasting 5-10 days. 4-5 courses of chemo are given on a monthly basis. Depending on the success of chemotherapy a BMT may be necessary.

Lymphoma

Lymphoma is cancer of the lymphatic system, which is part of the immune system that protects the body against infection and disease.

Hodgkin’s lymphoma

Cancer of the lymphatic system. Tumours affect the lymph nodes as lymphoma cells lodge in the system causing a lump. These are normally close to the body’s surface, such as in the armpit and neck.

Treatment depends on the stage of lymphoma. Most people need a combination of chemotherapy and radiotherapy.

Non-Hodgkin’s lymphoma (NHL)

Cancer of the lymphatic system that does not have the features of Hodgkin’s disease. NHL affects the lymph nodes deeper inside the body. There are different types of NHL, the two main types being B-cell NHL and T-cell NHL. B-cell NHL usually affects the neck, head, throat and abdomen whereas T-cell affects the lymph nodes in the chest.

The most common treatment for NHL is chemotherapy and occasionally radiotherapy. There can be some short-term and long-term side effects from NHL treatment.

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Med Stuff/What cancer is that?

Top Tips

Donâ&#x20AC;&#x2122;t let others keep on giving you bad advice

Type of cancer

Description

CNS Tumours

Cancers of the brain and spinal cord.

Brain tumours

Treatment

There are many different types of brain tumours. The most common tumours grow from glial cells, which are the support cells in the brain.

Some brain tumours are more serious than others and require more aggressive therapy. Treatment usually involves surgery to remove the tumour, and then radiotherapy and possibly chemotherapy, depending on the outcome of the surgery.

Germ cell tumours

These tumours develop in the reproductive organs (testicles and ovaries). They can travel to other parts of the body including the chest, abdomen and brain. The most common germ cell tumours are testicular, sacral, chest and ovarian.

Most commonly involves surgery to remove the tumour then chemotherapy.

Melanoma

Melanoma starts from melanocytes, the cells in the skin that produce the skin pigment or colour. Melanoma grows quickly which means it can spread to the lower layer of skin then into the body and other systems.

Melanomas are always removed by surgery. Radiotherapy may also be required depending on the stage of melanoma and whether it has spread to other organs.

Thyroid Cancer

Thyroid cancer affects the thyroid gland which is located in the neck. There are different types of thyroid cancer, categorised by growth rate, malignancy and type of cells affected.

Treatment may involve surgery, radiotherapy, chemotherapy and hormone therapy.

Other cancers or tumours

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Med Stuff/Tests and more

These are some of the most common tests that are used in the diagnosis and treatment of cancer. Test

What for

What happens

Biopsy

Used to find out whether a tumour or abnormality is cancer. Benign means it is not cancer. Malignant means that it is cancer.

A doctor removes a sample from a person using one of two ways: with a long needle (needle biopsy) or by making a small cut (surgical biopsy).

Blood test

An examination of the blood to see whether the balance of the cells and chemicals is normal.

A nurse or technician inserts a needle into a vein, usually in the arm. Then he or she draws blood.

Bone marrow aspiration

Collects a small sample of cells from inside a bone to be examined under a microscope to assist in diagnosing leukaemia and other blood disorders. It can also help to see if the cancer has spread.

A needle is used to remove a small sample of tissue from a bone (usually the hip bone).

CAT (computerised axial tomography) or CT scan

Uses x-rays and a computer to produce three dimensional (3-D) images of the inside of the body so the doctors can look for tumours and can also guide the surgeon to the right spot for a biopsy.

The patient lies flat on a table, which moves through a large tube while a series of x-rays is taken.

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Med Stuff/Tests and more

from arnt e l e r hav neve ing I nce is... cause you h t e e On xperie fullest, b r last. e this life to the will be you e day to liv hich w w kno

Test

What for

What happens

MRI (magnetic resonance imaging)

Uses radio and magnetic waves to make images of organs and other tissues inside the body so the doctor can make a more definite diagnosis.

The patient lies flat on a table, which moves through a large tube while an MRI machine scans the body for several minutes.

PET scan (positron emission topography)

Uses computerised pictures of areas inside the body to find cancer cells.

The patient gets an injection and then a machine takes computerized pictures of areas inside the body.

Spinal tap (lumbar puncture)

Collects a sample of the fluid inside the spine to be examined under a microscope. The doctor does this to check for infections or the build up of white blood cells or protein.

A needle is used to remove fluid from the spine in the lower back.

Ultrasound (ultrasonography)

Uses high-frequency sound waves to make images of internal organs and other tissues inside the body.

A technician moves a small handheld device over an area on the patientâ&#x20AC;&#x2122;s body. An image appears on the computer screen.

X-ray

Takes a picture of the inside of the body using high-energy waves.

The patient is placed in front of the x-ray machine or lies on a table.

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Med Stuff/Treatments decoded

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You will probably hear these terms used a lot while your parent is being treated.

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This chart explains what they are.

Treatment

What is it?

Side effects

Chemotherapy or ‘chemo’

This is the most common form of cancer treatment. Chemo uses drugs, called cytotoxics, to kill or slow the growth of cancer cells. While these drugs stop the cancer cells growing and multiplying they affect normal, healthy cells in the process. That’s why healthy fast growing cells such as the ones in your hair and inside your mouth are damaged by chemo.

Side effects vary from person to person, from one treatment to the next and depending on the type of treatment. The most common are nausea and vomiting, hair loss, mouth ulcers, loss of appetite and tiredness. These are usually temporary and disappear a few weeks after treatment stops. Some begin within 2-4 hours of the first injection and some happen a few weeks after treatment.

Radiotherapy or ‘radio’

Radiotherapy uses high energy x-rays, gamma cells or electrons to kill cancer cells, or injure them so they cannot multiply, in a specific part of the body. It can be used to treat the original (primary) cancer and to treat symptoms of cancer which has spread. The radiation will affect all cells in the area, however, normal cells are better able than cancer cells to resist or recover from its effects.

The side effects of radiotherapy will depend on which part of the body is being treated. One of the most common is tiredness and lack of energy This gets worse as the treatment goes on but gradually improves after treatment has finished. Other side effects include; skin problems, hair loss, loss of appetite, nausea and diarrhoea and chest problems.

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Med Stuff/Treatments decoded

Treatment

What is it?

Side effects

Hormone Therapy

Hormones are chemicals produced in glands that help regulate reproduction and growth. Examples of hormones include insulin, oestrogen and testosterone. Some cancers grow in response to hormones (or respond to changes in body hormones). Most hormonal therapies work by decreasing the amount of hormone in the body or by stopping the cancer cells from getting the hormones. By doing this, hormonal therapies can help reduce the size of the cancer and slow down the spread of the cancer.

Side effects from this treatment can differ for men and women. The most common ones are; tiredness, mood swings, weight gain, nausea and hot flushes.

Surgery

Surgery involves the cancer being removed while the person is under general anaesthetic or sometimes using just a local anaesthetic. Tumours are removed this way. For some people with bone or organ cancer it may be necessary to remove tissue from around the cancer to ensure that it is all remove. Sometimes the whole organ may be removed or a limb amputated.

The side effects from surgery are the same as any other operation; some pain and discomfort. Other side effects will depend on the type of surgery and what was done during the operation.

Complementary and Alternative Treatment

Complementary therapies are treatments that are not part of the conventional treatment routine for cancer (like the ones mentioned above). They are not scientifically proven, but complementary therapies such as relaxation, meditation, massage therapy and counselling, can help deal with the emotional and physical impact of the disease and treatment side effects. They can be used together with the other treatments.

There are few side effects from complementary therapies. With alternative treatments it is not easy to know what the side effects will be. It may be best to check this out with whoever is recommending the treatments.

Alternative treatments are used instead of conventional treatment. Again they have not been scientifically proven to treat cancer. Examples include; high doses of vitamins, special diets, magnets or drinking large amounts of vegetable juices.

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Med Stuff/Who is that person?

Your parent will be treated by a whole team of people. Sometimes trying to remember who does what can be a bit confusing. This chart will help. The blank column is for you to write in the names of the people who are looking after your parent. There may be more than one person who is doing the same job or your mum or dad may not have all of these people on their team.

Who are they?

What do they do?

Their name

Medical Team Medical Oncologist

A doctor specialising in diagnosing and treating cancer patients.

Radiation Oncologist

A doctor specialising in radiation to treat cancer. This doctor will decide if radiation is an appropriate treatment, will choose the best form of radiation treatment and then administer it.

Surgical Oncologist

A surgeon who specialises in removing cancers via an operation.

Radiologist

A specialist doctor who interprets X-rays, MRI scans and CAT scans to get pictures of the body.

Oncology Nurse Specialist

A registered nurse with additional education and training in cancer.

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Med Stuff/Who is that person?

Who are they?

What do they do?

Registered Nurse

A nurse who provides regular care in the hospital or outpatient clinic.

Cancer Care Coordinator

A nurse who is the main point of contact and helps patients and families communicate and deal with the different members of their treatment team.

Their name

Multidisciplinary team Social Worker

A trained professional who helps patients and their families adjust to life with cancer and treatments. They can help with things like support services, financial assistance and other practical issues.

Clinical Psychologist

A professionally-trained therapist who helps with emotional and intellectual well-being during cancer diagnosis and treatment.

Dietician

A professional who provides information to patients and their families about nutritional needs related to their cancer and treatment.

Pharmacist

A professional who is knowledgeable about drugs and medications that may form part of your parent’s cancer treatment

Physiotherapist

A professional who helps with recovering physical movement, like walking, bending and strengthening and may help with your parent’s recovery after surgery.

The most useful piece of information that I got was... don’t smoke, eat healthily, exercise – be healthy in mind, body, and soul, and smile.

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Med Stuff/Glossary

Cancer has a whole language of its own. Some of the terms you may understand, some you may never need to know and some will become part of your everyday language. Use this list to work out what the medical team is talking about (and to impress your friends). The highlighted words are also defined in the list.

Allogenic: Tissue from a matched donor (often referred to with bone marrow transfusions).

Autologous: Tissue from oneself (the opposite of allogenic).

Alopecia: The medical term for hair loss. Alopecia often occurs as a result of chemotherapy.

Benign: Non-cancer or non-malignant. Canâ&#x20AC;&#x2122;t spread to other parts of the body.

Anaemia: A condition where there is an insufficient amount of red blood cells in the body. It can cause tiredness and fatigue.

Bilateral: On both sides. Biopsy: The removal of a small sample of tissue from the body. This sample is then viewed under a microscope. A biopsy helps doctors to diagnose disease.

Anaesthetic: A drug given to a patient to stop them feeling pain during a procedure. It can be Blood: Circulates around the body through given as a local anaesthetic to numb the area or arteries and veins. It carries all different as a general anaesthetic to knock the person out! substances such as food, oxygen and chemicals Analgesic: A drug that relieves pain. to the bodyâ&#x20AC;&#x2122;s cells, and helps to fight infection. Blood consists of white blood cells, red blood Antibiotics: Drugs used to treat or prevent cells and platelets suspended in a liquid an infection. called plasma. Anti-emetics: Drugs that help control and Blood count or full blood count (FBC): prevent nausea and vomiting. Different numbers of the types of blood cells in Aspiration: Removing fluid from the body with the body. a needle.

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Med Stuff/Glossary

Blood transfusion: Red blood cells given through the IV. The blood is from another person. Bone marrow: The soft, spongy area in the middle of bones where red and white blood cells and platelets are made. Bone Marrow Biopsy: The removal of a small amount of bone marrow, usually from the hip. Cancer: A general term for a large group of diseases that have uncontrolled growth and spread of abnormal cells. Carcinoma: Cancer that forms in the tissue at the base of the skin that lines the body’s organs. Catheter: A small tube that can be inserted into the body for removal or injection of fluids.

Clinical trial: Research that involves giving medications to patients and studying the results. The aim of a clinical trial is to find better ways to treat or prevent disease. CT scan: A procedure that takes lots of x-rays of the body from all different angles so that a good picture can be formed. Cytotoxic drugs: Drugs that are given that damage or kill off cancer cells. Diagnosis: The identification of a person’s disease. Donor: The person giving their tissue or organ to another person. External beam irradiation: A common form of radiation treatment. Fatigue: A feeling of tiredness that isn’t fixed by sleep. Frozen section: A sample of tissue is taken and then frozen quickly so it can be examined immediately under a microscope.

Central line: A catheter placed into a vein in the chest. It is used to give IV fluids, blood products and take blood counts. Chemotherapy: The use of special (cytotoxic) drugs to treat cancer by killing cancer cells or slowing the spread of the cells.

One thing I have learnt from this experience is... that I am never alone and I have learnt to be strong emotionally and mentally.

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Med Stuff/Glossary

Localised cancer: Cancer that has not spread to other parts of the body.

Graft: Healthy tissue is taken from a part of the body or from another healthy person and transplanted to replace diseased or injured tissue. Haemoglobin: The component of red blood cells that carry oxygen.

Lymph: A clear fluid that flows through the body carrying cells through the lymphatic system to help fight infection. Lymph nodes: Small, bean shaped structures that filter the lymph to remove bacteria and other cells, such as cancer cells.

Hormone: A substance made by a gland that helps to regulate reproduction, metabolism and growth.

Lymphoedema: The swelling of an arm, leg or other part of the body because of an abnormal build-up of a fluid called lymph in the body tissues. This sometimes happens if the cancer blocks the drainage of fluid through lymph system. It can also occur when the lymph nodes have been removed by surgery or damaged by cancer treatments such as radiotherapy.

Immune system: The network of cells and organs that help to defend the body against foreign invaders like germs

Malignant: Cancerous. A malignant tumour is likely to spread to other parts of the body if left untreated.

Immuno-compromised: Weakening of the immune system often caused by disease or treatment.

Metastasis: A secondary tumour that has spread from the primary site through the lymphatic or blood system.

Infusion: Slow injection of a fluid into a vein or tissue.

Neutropaenia: An abnormal decrease in the number of neutrophils, a type of white blood cell.

Intravenous: Giving fluids, drugs or blood directly into a vein.

Oedema: Swelling caused by an accumulation of fluid in the body or tissues.

Haematology: The type of medicine that studies the blood. The doctor that specialises in this is called a haematologist.

Limb salvage surgery: When the original bone (or part of the bone) is replaced with an artificial (prosthetic) bone or bone from another part of the body.

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Med Stuff/Glossary

Staging: A way to identify the extent of disease. It is then used to determine treatment.

Palliative Care: Treatment that focuses on relieving the side effects or symptoms of a disease, but will not cure it.

Stem cells: Immature cells found in the bone marrow from which blood cells are formed.

Platelets: Part of the blood that stops bleeding by aiding blood clotting. Prosthesis: Artificial replacement for a body part that has been removed. eg. arm, leg, breast. Radiation: Energy in the form of radio waves that can injure and destroy cells, particularly cancer cells. Red blood cells: Cells that contain haemoglobin, which carries oxygen around the body. Relapse: The return of the disease after treatment and a time of improvement. Remission: The absence of signs and symptoms of active disease.

Top Tips

Plasma: The fluid portion of the blood in which cells and platelets are found.

Ask questions even if you are scared to do so

Oncologist: A doctor who specialises in the treatment of cancer.

Survival rate: The percentage of people who are still alive after a particular length of time with a certain disease. Terminal: When a disease cannot be cured. Thrombocytopaenia: A decrease in the number of platelets in the blood, causing blood to take longer to clot. Total body irradiation: Radiotherapy to the whole body, usually given prior to bone marrow transplants. Toxicity: Harmful side effects caused by a drug. Tumour: An abnormal growth in the body. Tumour marker: A substance found in the blood produced by a tumour, which can indicate how treatment is working. White blood cells: Cells in the blood that help to fight infection.

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Handy Stuff/Where to get help

www.cancer.org.au The Cancer Council website has some really good, clear information on lots of things to do with cancer including different types of cancers, treatments and side effects. From this site you can access the Cancer Councils in your state www.leukaemia.org.au The Leukaemia Foundation provides information and practical support for patients and families who are living with leukaemia, lymphomas, myeloma and other blood disorders.

These are organisations and websites that can help you deal with lots of things to do with living with a parent who has cancer. We have included some of the most well known and reliable sources for you. Of course you can search for other resources on the net, but just remember the â&#x20AC;&#x153;Good Googling Tipsâ&#x20AC;? (on page 12) to make sure that what you find is going to help.

Websites www.nowwhat.org.au This website is designed for all young people living with cancer. You can access the information from the book as well as more detailed information on some topics. It also has other useful resources, stories, blogs and forums to support you. www.canteen.org.au CanTeen is a fantastic organisation for young people 12-24 who have a parent who has cancer (or a brother or sister or they themselves have cancer). They run a whole lot of programs that are aimed at linking young people together who share similar experiences. They also work with bereaved siblings and offspring.

www.reachout.com.au A site especially for young people going through tough times. Reach Out has fact sheets on depression, self harm, drug and alcohol as well as grief and loss. www.cancer.gov/cancertopics An American site that has lots of information on a wide range of cancer topics. It has reliable information on genetics and cancer and dealing with emotional stuff. Remember it is written more for adults. www.riprap.org.uk A UK site that is about supporting young people living with a parent who has cancer. www.myparentscancer.com.au This is mainly about young people who have a mother with breast cancer, but lots of the information is relevant for any cancer. A great site with information on things like healthy eating, drugs and alcohol, relationships and money and finances.

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Handy Stuff/Where to get help

www.kidshelp.com.au This has a free and confidential on-line counselling service as well as other helpful information on dealing with tough things. www.lifeline.org.au This is a national organisation that has useful information on counselling, health, accommodation and a wholeÂ lot of other services. www.beyondblue. org.au/ybblue This is the youth website of beyondblue: the national depression initiative. ItÂ has links to other support organisations and also has a list of doctors who have experience in dealing with depression. There are also fact sheets on depression. www.skylight.org.nz A fantastic website with loads of stuff that is helpful and supportive for young people going through a rough time.

www.youngcarers.net.au This organisation supports young people who are caring for a parent who is mentally or physically ill. They run support programs and provide information and links to other services. You can access the Young Carers Association in your state from this site. www.younggourmet.com This is a great website to do with food, cooking and all things to do with eating. There are recipes, tips and competitions. www.centrelink.gov.au This is where you can get all sorts of information on Government allowances and financial support.

www.workplace. gov.au/workplace/ Programmes/WorkFamily/ Carersleave.htm This is the link for information on taking leave to care for a parent.

Telephone numbers Kids Helpline 1800 55 1800 LifeLine 13 11 14 Cancer Help Line 13 11 20 CanTeen 1800 226 833

www.lawstuff.org.au If you have questions relating to legal matters this website provides lots of answers and also links other legal sites.

One thing I have learnt from this experience is... how strong my family really is and how we will do anything for each other. 79

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Handy Stuff/Bibliography

The following books, websites and publications have been useful in putting this resource kit together:

When Your Parent has Cancer – A Guide for Teens National Cancer Institute US Department of Health and Human Resources Hipp,E. (1995) Help For the Hard Times – Getting Through Loss. USA: Hazelden Vercoe, E., Abramowski, K. (2004) The Grief Book – strategies for young people. Australia: black dog books. www.riprap.org.uk A website developed by the team at the Sheffield Palliative Care Studies Group www.myparentscancer.com.au The National Breast Cancer Centre’s website for young people with a parent who has breast cancer.

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Acknowledgements Now What? Dealing with your parentâ&#x20AC;&#x2122;s cancer. Free copies of this book are available by calling CanTeen on 1800 226 833 or by going to www.canteen.org.au We acknowledge the contribution of both members and staff from CanTeen in developing this resource. We thank reviewers of this booklet: Dr Pandora Patterson, Professor Chris Oâ&#x20AC;&#x2122;Brien, Dr Micheal Carr-Gregg, Alyssa White & Laura Weuller from the NSW Cancer Council, Myranda Hassler Long, Jacinta Chandler, Jade Nixon, Simon Treadgold, Claire Wyatt, Dr Claire Treadgold. Written by: Pauline Don Designed by: Devotion Printed by: Imago Productions This book was developed and funded by CanTeen, the Australian organisation for young people living with cancer. CanTeen would like to thank the Sony Foundation for their generous financial support for the original development of this project. If you would like to support the work of CanTeen call the below number or go to the CanTeen website. CanTeen Australia GPO Box 3821, Sydney NSW 2000 Free Call: 1800 226 833 ABN: 77 052 040 516

This book is intended as a general introduction to the topic and should not be seen as a substitute for advice from doctors or other health professionals. All care is taken to ensure that the information contained here is accurate at the time of publication.